Thursday, 24 April 2014

Post traumatic stress disorder - an interesting article in relation to cancer


Childhood Cancer and Post-Traumatic Stress Disorder

"Your child has cancer." These are words no parent ever wants to hear.

"You have cancer," is often a meaningless sentence to a child, but the fear and horror the child sees in his parents' faces and hears in their voices is unmistakable.

For parent and child, a cancer diagnosis is a mental shock. And the physical shocks that follow that diagnosis- invasive treatments, surgeries, radiation and chemotherapy are also difficult to bear, also potentially traumatising.

Cancer is a life threatening disease. And the threat to life- including the treatments to save life-can be traumatising to those who witness their child or sibling going through cancer treatment. Death of course makes it even harder. Treatment is also potentially traumatising to the child with cancer, potentially leaving psychic scars lasting well after a hopeful recovery.

Facing a series of repeated life threatening events puts each of this group (parents, siblings, and the childhood cancer patient as well) at risk for developing post-traumatic stress disorder (PTSD). PTSD is a disorder that is commonly associated with exposure to combat, natural disasters, or bodily assault.

PTSD in those who experience cancer, usually presents in response to feeling one's life or one's child/or sibling's life is under serious and/or repeated threat.

The symptoms of PTSD include:

• Re-experiencing the cancer treatment in nightmares, intrusive thoughts or flashbacks--scenes that are often reported to be much like full sensory movies playing unbidden in one's mind. • Avoiding places, people and reminders of the cancer experience including shutting down sharing with others what one has been through. • Negative changes in beliefs and feelings including feelings of guilt, fear, shame or losing interest in previously enjoyed activities and feeling alienated from others. • Bodily hyper-arousal experienced as agitation, inability to fall or stay asleep, being easily startled, irritable, having difficulty concentrating and so on.

To qualify for a diagnosis of PTSD these symptoms must last for longer than a month and must significantly interfere with life functioning in relationships, work, education or other important areas of life.

In some cases delayed responses occur and in others only some of the features of PTSD occur. Or other related disorders arise such as anxiety disorder or panic, phobias or depression. Those who are suffer from PTSD are also at increased risk for substance abuse--as alcohol or drug abuse arises out of attempts to self medicate flashbacks and nightmares away.

Children who have PTSD often manifest their symptoms in ways that are unique to their developmental stage. For instance traumatized children may revert to wanting to sleep with their parents or go backwards on skills they previously mastered. They also often display a need to play and replay the cancer experience in attempts to master it. Or hyper-arousal may come across as aggression or misbehavior, especially in boys. Girls often go dissociative following a traumatic event--meaning their minds compartmentalize the event. They may say "everything is fine" and show no emotion but if someone where to measure their pulse when cancer is being discussed, they would see that their bodies are showing agitation. More loving touch, sleeping near to parents, and loving interactions with pets can help both adults and children to self soothe in the face of hyperarousal and posttraumatic re-experiencing.

When it comes to trauma children also often take their cues from their protectors. Parents who stay calm and who modulate their emotions well model to their children about how to cry over sad news, stay strong in the face of fear and self comfort, as well as seek comfort for overwhelming emotions. Parents who get hysterical or who shut down emotionally provide little support for children who have to navigate their own emotions and need help doing so.

The risk factors for developing PTSD in response to cancer include longer hospital stays, recurring cancers, invasive procedures such as bone marrow transplants, greater experiences of pain, previous traumas, previous psychological problems or high levels of stress in general. The protective factors against developing PTSD include a strong support network; help regulating emotions, and a good relationship with the medical staff.

PTSD following cancer should be treated sensitively. A child who is for instance triggered into fear states by the smell of a hospital or medical setting, or white lab coats needs help working through their present day anxiety while separating it from the pain or distress that went before. Children and parents may need help reframing present day thoughts that lead to anxieties and slow exposure to triggers to understand they are different (and safe) now, and help learning to calm.

The child patient as well as his or her siblings may develop more behavior problems than before the cancer treatment, become clingy or need help expressing anger versus acting it out. They may also want to avoid reminders of anything to do with cancer and even the medical system. In some case avoidance works to a certain point, but too much avoidance creates a cycle of trying to shut down only to have the painful re-experiencing start up again with another exposure to triggering reminders.

Families are strained when cancer is part of the picture. And each family member has their own way of responding to traumas--withdrawing, acting out, etc. adding an even heavier stress load on the marriage and family system. It can be hard for parents to meet the needs of everyone equally. Often the sick child gets all the attention and the siblings suffer and learn to withdraw or meet their needs outside the family creating complications later on.

Marriages are also at risk when one partner develops PTSD. For instance Stacey, a mother deeply traumatized by her young son's cancer diagnosis and treatment found that after a hopeful resolution of his cancer she could no longer sleep well and was plagued with nightmares, flashbacks of hospital procedures and flash-forwards of imagining a dire future--including the return of cancer and death of her son.

To cope with her psychological agitation Stacey started avoiding activities she previously enjoyed. She stopped going to her son's school or sports activities, didn't want to have sex with her husband or go out to dinner with their friends--responses that Jim, her husband found inexplicably painful. And when Jim became angry over not understanding that posttraumatic triggers were causing Stacey to "shut down" they would have painful arguments that resolved nothing.

Children and adults with PTSD do best to work slowly with help if needed, through their traumas by facing it in small steps and creating a narrative of sorts that works for them. One of the most painful parts of PTSD is dealing with a trauma that makes no sense and for which one has no cognitive frame--"You have cancer," is often too horrific a statement to accept. Or the suffering of a child in treatment is also too horrific to accept--at first. But over time, cognitive frames must be created in which one finds peace and accepts into one's life story that indeed this trauma occurred and now needs to be accepted as real.

Running away from it and living with the painfulness of cycling through flashbacks, avoidance and hyperarousal is no way to live. Medications in serious cases may be useful, and relaxation training is also helpful. Simply understanding what one has been through and that posttraumatic responses--even to cancer--are normal can help to work through it.

Most PTSD sufferers feel a sense of foreshortened future--that their lives will not be as long as previously expected or as fully lived. In some case that is the sad reality, but in others it is simply fear that needs, like the cancer, to be excised from the mind.

In the end, both the trauma and the cancer need to be accommodated and the sufferer must find peace in mind and soul with both--no matter the outcome.

Anne Speckhard, Ph.D. is Adjunct Associate Professor of Psychiatry at Georgetown University Medical School and author of several books. Her latest children's book isTimothy Tottle's Terrific Dream.

Wednesday, 23 April 2014


Above is a link to the audio of Harry's funeral service. I know a few may be interested, whom were not there. Sorry, though that the photo slide show cannot be heard! But you can visualise Harry to the music, 'sing, by The Military Wives'. I felt the words of this song were fitting and the lines in particular 'you brought hope, you brought light, conquered fear, no it wasn't always easy. Stood your ground, kept your faith. don't you see right now the world is listening to what we say'. 

Harry you were feisty like your mum and well the Dedman/Buckley clan.

These are the words I gave the curate John Parkin to read out at Harry's funeral for me. I chose not to speak, as I would have, had to remain composed and in a clinical state about what is the saddest thing any mother has to do, sit through her son's funeral. 

Words by mum

Harry has always been a strong character. In fact when I was pregnant with Callum, friends would say that number 2 surely couldn't be quite so active, Callum in fact was more active walking at 8 1/2 months, but that's another story.
The determination and strength of character that Harry developed in his toddler years, was to see him through the rest of his short, but full life. Harry became poorly in October 2011 and it wasn't until 12 th November 2011 that we heard the words cancer and not just any old cancer, Neuroblastoma cancer. Harry had to undergo one of the most aggressive treatment protocols there is. He had 15 months of treatment in total. Harry would bounce back after each step of the treatment and be ready to rejoin his friends, playing out as any child his age did. 
When we found out that Harry had relapsed disease in March 2013, we were determined to have as many adventures as possible and boy did we pack them in. Those memories and happy days will remain with us forever. 
You, battled to the very end my dear, beautiful Harry, still wanting to finish the model army barracks we made. The only day you remained in bed was the day you died. 
You remind me of the knight from 'Monty Python and the holy grail', the one whom had his arms and legs chopped off, but was still determined to fight. You, my brave boy was on so many, many drugs towards the end and was so very weak, but your mind was still active and you could still direct everybody even if your body could not function for you. 
We love you to the stars and back and a zillion times round the world and back again, always and forever in our hearts. 

So Harry from the moment you took your last breath, we continued to do our best for you. Our McMillan nurse drove us to Martin House hospice. No body bags needed, as you sat on my lap and I was able to cuddle you, free from pain, all the way to where you could lay to rest, in a bedroom, kept at a cold temperature to preserve you. Your daddy, carried you from the car to your bed and we made you comfortable. There we could visit you frequently, read the many cards we received, particularly the ones that your friends wrote. You stayed there, until the evening before your funeral service. We chose a red coffin for you and we decorated it with disney planes wall stickers. We know you would have approved. Daddy lifted you carefully into your coffin and helped to carry you out of Martin House into the car, whereby you would be taken back to Otley and the chapel of rest at Pickles funeral directors. Callum and I saw you for the last time too and we both cried at the finality of this poignant moment. 

Having had much deliberation over the music to which you should go down the isle to and return to, we finally chose music which felt fitting. We did have some black comedy moments, when deciding and wondered about starting on 'Celine Dion's - your heart must go on', then slipping into ,'staying alive' by the bee gees, as your coffin gets taken into the air on strings, as the coffin bearers do the staying alive jig, then the coffin returns to the bearers and the music goes back to Celine Dion! Fortunately, we didn't have enough time to organise such a stage production! But I think you would have smiled and danced in your coffin! 

However, I felt what we did organise and put together was a true reflection on your life and was such a beautiful service. It could not have been better. Your friends James and Rosie read 'no matter what' beautifully and it felt so fitting to include your friends in the service, as it did when the children waived flags to 'shine Jesus shine', with the words, 
'Lord, the light of your love is shining,
In the midst of the darkness, shining' 
Reflecting the darkness we feel at losing you, but knowing light will shine through this. 

We would like to thank all and every one of you for attending Harry's service and for the £1021 collected at the end of his service. 
This will be split between the church and The Thomas Ball Children's cancer charity. Some will go to research and the online just giving page will go towards the holiday lodges that the charity have.

Harry's party at High Royds, was a huge success too. Many of Harry's friends were there and enjoyed the food, bouncy castle, arts and crafts and the balloon release. In fact we have had confirmation where 3 out of the 200 balloons landed. One in Suffolk near where I grew up, one in Southern Germany and one in Austria. Harry, you must have been Flying high with the balloons to get them so far. This was truly magnificent to know they reached other parts of Europe!

Your book was also sold at your party and we now need a 3 rd reprint! We have sold nearly 200 books, raised £1257 including gift aid for Nuzzlet's farm. Had a further check for £160 for the farm and have kept £400 in cash to pay for another 200 books! 

The Otley Lions book shop, is selling Harry's book, it is based in Otley, on Mercury Row, opposite the solicitors Newstead and Walker. 

We have had some media interest in the book too, Harry would love that, he liked being famous, following his few seconds of fame in 'The Secret Millionaire' filmed in April 2012! He was in LGI having his stem cells harvested, when the film crew appeared! 

So Harry, we are at a new chapter in our lives - learning to live without out. This is probably the hardest chapter of all and the one we need the most courage for. Your smile beams at us from all corners of our house as we catch glimpses of the many photos we have and we have a hole in our hearts now, I guess time will heal this, but there will always be a corner of our heart missing, because we no longer have you on earth with us. 

We have your ashes back with us and it feels you are home again. We will scatter you, when the time is right. We have initiated getting a bench on the chevin for us to sit on and ponder your life with us and take in the view we have there, in front of your tree. A truly special place. 

So, my dear Harry, I hope you are flying high and exploring the world above us and ordering all the other angels about! There are many dear angels up there, many your age, taken too soon.

Fly Harry Fly! X 

Thursday, 10 April 2014

Fly High Harry!

Harry lost his long and courageous fight with cancer at 7.40pm on Tuesday 8 th April. Harry remained in bed all day on Tuesday, a first! He was incredible settled and slept the entire day. He didn't speak to us and wasn't able to squeeze our hand anymore. We knew he was in the very end stages of his life with us. We had a very quiet day with Harry and between the continuing care nurse in the morning, daddy and myself, we took it in turns to sit with Harry. Daddy and I both told him how brave he has been and what an amazing son he has been, but told him, the time had come for him to fly high up into the sky and leave his body that didn't work anymore. We told him it was time for him to find that special place where he will get a new body and where he can run as fast as he can. 
Harry's breathing changed late afternoon and became more laboured. At 6pm he became a bit distressed by his inability to breath well and so I contacted our McMillan nurse Julie White, who told me to administer some oral medazelam. This calmed him down and he became settled again. Julie came straight from the hospital to be with us, to ensure Harry remained settled. Whilst at our house she contacted the consultant at Martin House re drugs etc to keep Harry comfortable. 
We had been told that as Harry's body shut down, his feet and hands would go cold. I asked Julie White if this stage was sometimes missed out and she said no, not usually. However, Harry chose to defy everybody again and skipped this stage! 
Between 7pm and 7.40pm his breathing became more laboured and when he took his last breath I was holding his hand and Julie White was in the room too. It was just as I had hoped, very peaceful and with me by his side. Daddy was downstairs keeping Callum company, they were watching Cars 2, the movie. With them only downstairs, it meant daddy could come and say goodbye and then we got Callum in to see his brother. I have been reading animal stories with Callum over the last few days, that deal with dying and then remembering the decased! In fact only the previous  evening had I read 'always and forever' with Callum. A story about fox being, pale and thin and ill, just like Harry. I spoke to Callum re the similarities between fox and Harry. Callum said that Harry wasn't going to die and when I asked him why, he said because he didn't want him to. I had to confirm to Callum that Harry was going to die. Callum heard what I was sayng, but wasn't upset, with his 4 year old head on his shoulders he wasn't quite able to compute this, but he understood the story and liked the fact that fox's friends sat on a Bench at the end remembering all the fun things they did together.
When we took Callum to see Harry, he kissed him and laid next to him in the bed. I made sure he was aware that Harry was dead forever. Callum sobbed and spoke between tears of his loss of anyone to play with. He spoke of the loss of his brother. I felt this was very healthy for Callum and we just held him as we all shed tears for Harry.
As it was late by the time a doctor had been out to confirm Harry's death, we decided to stay at home with Harry until the morning. Julie White, helped me wash Harry and change him into some fresh clothes. The T-shirt I put him in is his favourite, it is a dusty planes one with the words 'the sky is calling'. This felt extremely appropriate. It is the t - shirt that ben,Suzanne, Adam and Flynn had bought him for his 6 th birthday!

Forever 6 Harry my beautiful boy, now you are no longer in pain. Fly high. 
We love you to the stars and back and a zillion times round the world, always and forever.

Monday, 7 April 2014

Harry's book!

The above link gives details how to pay for a copy of Harry's book, called 'Runaway Joey!'

It is priced at £5 per copy.

It was written and created by Harry and his Playworker Janey. The words and the story are Harry's, but Janey has helped him with the English, Grammer and spelling. 

The money is going towards Nuzzlet's farm, which takes animals into Martin House, for the children to love and hold. The farm is expanding and since it is a small charity and one Harry holds dear to his heart, we have chosen it to have the proceeds from this lovely book.

The link above gives more information.

If you want a copy, please pay via the link, giving your name and if you want it posting, please email me your address on

If there are a lot of orders, we will probably have to go for a reprint!

Postage is 60p for 1 book and £1.20 for 2 or 3 books! Please add the postage when paying through the link! 

Harry is still with us and hanging on.
He is incredibly frail and his speech is slurred and hard to comprehend due to the drugs. However, he despite his body failing him, his brain is still ticking and yesterday afternoon he still wanted to finish making his army barracks. He directed the nurse with him to add the moss that was drying out!

Harry reminds me of the knight from the film 'Monty Python and The Holly Grail'  the one that had his arms and legs cut off, but was still determined to fight and not give up!

We are trying to tell him that its ok to go and move to another place where he will have no pain, a place where he can fly and be free. However, he is clearly not quite ready to leave this world. 

Wednesday, 2 April 2014

Link to a special you tube video!;_ylt=A7x9Qafl0TlTEyMAmdBB4iA5;_ylu=X3oDMTBsZ3ZhODNnBHNlYwNzYwRjb2xvA2lyZAR2dGlkAw--?p=youtube+run+for+harry+day+ten&tnr=21&vid=d06c1b452b1c8187b1f5ecfb1162e623&

I am not sure if this gives a direct link, but if you google You Tube then search Run for Harry day ten, you should find it!

Andy Johnson from Paul's work decided last year to train to do 10 x 10 km runs and raise money for us to continue on our adventures with Harry. He has just completed the 10 consecutive runs, with others joining him for some or all if the runs. 
Since Harry is so very poorly this will not happen, but we will use the money to have adventures with Callum this summer. It feels such a long time since we had real fun, because sometimes each day seems like a week. 
Harry's drugs are being increased every couple of days and even though we have done that, we are not on top of his pain. He is having extra oral top ups, to combat the pain and consequential sickness the drugs create.
He is still trying to fight and won't stay in bed all day. He insists on getting up. He is incredibly week, but still has ideas even though he hasn't the strength to build the Lego, he can still direct! 
The above you tube video has clips from footage we took last summer of our adventures and the last 4 minutes is dedicated to showing these.

I showed Callum the clips and was taken aback by him sobbing his heart out afterwards. He is beginning his journey of 
Grief and loss. Watching the  live footage of Harry hit him hard. He felt a real sense of loss and articulated that it upsets him that  Harry does not play with him anymore, he does not let Callum kiss or hug him anymore, he does  not let Callum get things for him anymore. Harry doesn't let us hug or kiss him much anymore either, due to it being too painful. I told Callum that it was ok to cry and get upset, as we get upset too and we wish that Harry could walk and do things like he used to. We need to support Callum too. I will also seek out support for Callum. Some people say he is only 4, but to equip Callum with the appropriate 'tools' to manage his grief will help him deal with future losses, it will help him continue on his own journey of growing up and hopefully help him survive as an adult. To not address such monumental changes in our family unit, will give him increased baggage for later in life. I hope we have the strength to support him and not wrap him up in cotton wool either as our only remaining son. 
We have already started talking to Callum about the fact that Harry will not get better, to be able to go to places such as Digger Land. It's hard to know how to approach the subject of dying to a 4 year old, but he is aware that animals die. 
Callum asked me the other day how long joey the hamster will live for. I said they usually live for about 2 years, so probably till Callum is 6. He asked me how long people live for and I said that it depended on whether they got poorly or not. We then talked about the difference between colds and more serious illnesses. I did sat that Harry was very poorly. Hopefully, drip feeding information to Callum will help a little, but none of us can truly prepare him or us for the infiniteness of death.
I have been given some books, so will look at these and then post the titles on here for your information.